My Autistic Brain Tumor Survivor

5 Things NOT to Say to the Mother of a Child With a Life Threatening Illness!

*Please note: A version of this post was originally published on October 7, 2014.

Ever since Bethany was diagnosed with a very large brain tumor I’ve been the recipient of much unwanted “medical” and spiritual advice.

Bethany has been cancer free for sixteen years now, but because she became permanently disabled as a result of her life threatening illness, sometimes people still feel compelled to offer me the same witty and still unwanted advice that I first heard so many years ago when our journey first began!
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5 things not to say

In order to spare other families a little bit of grief, I beg of you, please NEVER say the following 5 things to parents of a child with a life threatening illness!

1) Have you prayed about this?

Though I never actually say this out loud the response to this statement in my head is always a sarcastic,  “No not at all.   The thought has never even crossed my mind to ask God to let my daughter survive this life threatening illness!”

2) Have you tried (insert latest miracle cure here)?

When there is a tumor in your child’s head that is so big the pressure and strain it’s putting on her brain could kill her at any moment all you want and NEED to do is get it out of her head as soon as possible.

Most children with life threatening illnesses cannot wait days, weeks, or months for a natural remedy to do its magic!

I personally believe that the following three statements are said as coping mechanisms.

People actually say these things to make themselves feel better, not really to be supportive or helpful to you.

They need to believe that you did something bad that caused your child to get sick.

That way, they can avoid doing whatever it is that you did wrong and not have to worry that the same thing could just arbitrarily and out of the blue happen to their child.

3) God is punishing you because you or your husband has secret unconfessed sin.

Let me be perfectly clear here, I do not believe that God makes children ill to punish their parents for secret sins.

If God wanted to punish my husband or me for sins that we committed, then  wouldn’t it make more sense for Him to make us get sick?

4) God is trying to get your attention because there is something wrong in your life that you need to change.

Again, wouldn’t it make more sense for God to make ME sick to get MY attention?

5) You just don’t have enough faith or God would heal her.

Sorry, but it’s my opinion that it takes lots and lots more faith to live with my child not getting healed than it would if God answered my continuous prayer to stop her relentless suffering.

It’s also my opinion that the people who say this don’t understand that real faith is still having believing in God even when He doesn’t give you everything you ask Him for!
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*This post may contain affiliate links. Thanks in advance if you should decide to purchase an item through one of our links at not extra cost to you. 100% of all commissions earned from sales go directly toward providing a better quality of life for our daughter, Bethany, a brave brain tumor survivor and special girl!

 

Be sure to visit Bethany’s Business, our store full of special needs family products and special needs homeschooling resources! All commissions go toward providing a better quality of life for Bethany! Thanks!

 

 

 

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30 Comments

  1. Phyllis at All Things Beautiful

    I am so sorry that people have said these things to you. They are incredibly rude, even mean.

    Reply
    1. Sylvia (Post author)

      It’s hard to believe, but people really have said all those things to me. I don’t think they were mean or rude intentionally though.

      Reply
  2. Kerith Stull
    1. Sylvia (Post author)

      I’ll be over to check out your post, Kerith!

      Reply
  3. Gabriella

    I cannot comprehend how people have dared to say such things to you! I love your responses. Praying for you and for your daughter.

    Reply
    1. Sylvia (Post author)

      Thank you Gabriella. It’s sad but true. People have said all those things to me over the years.

      Reply
  4. Jennifer

    *hugs* It’s amazing what people feel the freedom to say when they haven’t walked a mile in your shoes. Thank you for raising awareness so that maybe just *one* other mom won’t have to hear those things. Offers to help and thoughtful comments go much further than the trite, pat answers.

    Reply
    1. Sylvia (Post author)

      Thanks for the Hugs, Jennifer. And I do so agree with you!

      Reply
  5. Out One Ear - Linda Atwell

    OH MY GOODNESS! Someone once asked me #2. But fortunately, no one has asked the other four. I might not have acted the way I was taught: like a lady. And I thought my pet peeve comment would be in your list (but wasn’t): Oh, my kid does that. But in reality, he/she doesn’t do anything to the degree my daughter does it (since my daughter has a short in her neurological system and doesn’t reason well.) I just want to say sorry for all the irresponsible comments that have been offered to you. Shame on people.

    Reply
    1. Sylvia (Post author)

      Thanks for stopping by, Linda. I’ve never heard that one, but I understand how annoying it is when people try to minimize our kids challenges. I hope you never do hear any more of these things ever!

      Reply
  6. Victoria

    You are right, these are not good questions to ask in this situation. Another one that always bothers me is when some well-meaning Christians say autistic children are demon possessed and can be healed through spiritual warfare. So far, I have had two people approach me with that.

    Reply
    1. Sylvia (Post author)

      That is simply awful, Victoria! I think that one would make me punch the person who said it. People can be so ignorant.

      Reply
  7. Pingback: Friendship Friday: A Special Needs and Homeschooling Link Up |

  8. Jaime

    I’m just so sorry. People tend to say dumb things, meaning well, but just talking to hear themselves talk. God bless.

    Reply
    1. Sylvia (Post author)

      I’ve been guilty of saying some pretty dumb things to hurting people myself. We don’t know what to say so we sometimes say some very unhelpful things. Now I just try to keep my mouth shut unless I absolutely know that what I’m going to say is supportive and loving.

      Reply
  9. Beth

    I clicked on your post to read…thinking, you know even as a parent of a child with a disability I frequently don’t have a clue what to say and often say something dumb…wow! I am so sorry you have had those kinds of comments they are horrible, it is amazing how ignorant people can be…I try to think that most mean well but sometimes I do wonder how people can actually think what they do. The ebooklet you have written looks helpful, I haven’t downloaded it yet but I look forward to reading it.

    Reply
    1. Sylvia (Post author)

      I know when trying to sound super spiritual, I’ve said some pretty stupid things to people myself, especially before Bethany’s illness. Now I just try to listen, pray, and be there for people. Please do download my eBook and share it too! Thanks for stopping by and taking the time to comment, Beth!

      Reply
  10. Kellie

    Wow I’m amazed that people have felt the need to even say these things to you. What happened to listening and being supportive?

    You’re all in my thoughts.

    Reply
    1. Sylvia (Post author)

      I think most people think they are being supportive and others are just plain scared that it might happen to them so they need to come with a reason why it won’t! Thanks for stopping by and sharing your thoughts, Kellie!

      Reply
  11. Anna

    Those people who say your sins make your child ill may have never read this verse:
    Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.” John 9:3

    Reply
    1. Sylvia (Post author)

      Yes! Exactly! Thanks for pointing that out, Anna!

      Reply
  12. Pingback: Dialogue: what not to say – and what TO say – to special needs parents | Beautiful In His Time

  13. Joy

    Wow! It amazes me that someone would even think that way, much less say those things aloud to you! That is so insensitive & just plain rude! God doesn’t work that way. I agree with Anna. Also, another verse that these people should take a look at is “Carry each other’s burdens, and in this way you will fulfill the law of Christ” .Galatians 6:2 People need to be kind and offer THEIR prayers for you, rather than accusing you of sin, or asking “Have you prayed?” (how ridiculous) I wish you all the best, and as always, will keep you and your family in my prayers.

    Reply
    1. Sylvia (Post author)

      It’s definitely a weird and unkind way of responding to someone else’s crisis, isn’t it?

      Reply
  14. Joy

    Hi! I’ve just nominated you for a new tag, the Smile tag. Check it out at http://www.findingjoy568.wordpress.com

    Reply
    1. Sylvia (Post author)

      Thanks Joy!

      Reply
      1. Joy

        Would you like to take part ?

        Reply
        1. Sylvia (Post author)

          Yes, I do plan to participate. I just haven’t had the chance to yet!

          Reply
          1. Joy

            That’s great! Looking forward to seeing your SMILE pics!

          2. Sylvia (Post author)

            I’ll try to get to it soon!

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